Would anyone be able to copy and paste the text of the letter? It's blanked out for me (probably because my browser blocks Twitter trackers etc)
Dear Wes,
Concerns Regarding ME/CFS Strategy in the Final Delivery Plan
As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of a strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery
Plan - ME/CFS are debilitating and affect an estimated 1.3 million people in the UK.
Despite its scale and impact, ME remains severely underfunded and poorly understood. There are currently no diagnostic tests or effective treatments. Research activity is limited, fragmented, and lacks the coordination necessary to deliver meaningful progress. This is particularly troubling given the availability of valuable research assets such as the UK Biobank and DecodeME, and the clear overlap with the growing phenomenon of Long Covid. Evidence suggests that up to half of people with Long Covid are experiencing symptoms that closely mirror those of ME.
The UK is rightly recognised for its world-leading life sciences sector and yet this strength has not been directed toward solving ME, which continues to leave millions without answers or hope. In 2017, ME was estimated to cost the UK economy £3.3 billion a year. Adjusted for inflation and revised prevalence estimates, that figure is now thought to exceed £20 billion annually, largely due to lost productivity and the pressures placed on carers and the health system.
We believe there is now a clear case for a national, coordinated approach to ME and post-infectious disease research. A dedicated hub would help unlock scientific breakthroughs, attract long-term investment and ensure that patients, clinicians and researchers are working together to build a future with effective diagnosis and treatment.
Will you agree to meet with Action for ME to discuss these concerns and explore how the Department can support a more strategic response?
Yours sincerely,
John Milne MP
Member of Parliament for Horsham
Graeme Downie MP
Member of Parliament for Dunfermline and Dollar
Monica Harding MP
Member of Parliament for Esher and Walton
Max Wilkinson MP
Member of Parliament for Cheltenham
Steve Race MP
Member of Parliament for Exeter
Wendy Chamberlain MP
Member of Parliament for North East Fife
Alison Hume MP
Member of Parliament for Scarborough and Whitby
John McDonnell MP
Member of Parliament for Hayes and Harlington
Tessa Munt MP
Member of Parliament for Wells
Baroness Scott of Needham Market
Member of the House of Lords
The Rt Hon, The Lord Bethell Member of the House of Lords